Happy Two Months!!

It's almost unbelievable, but Miss Rebekah celebrated her two month birthday today! She had a very low-key day, but did get to see Grampy and Grammy last night and this morning.

Justin loves his sister!

Rebekah is doing much better with her eating. Thank you all for praying; we are very excited to say that after a rough 24 hours immediately following the tube placement, Rebekah has done very well! The tube Rebekah has right now is an Ng tube (goes in through her nose to her stomach), and it is a more temporary type of Ng tube. Because it is more temporary, it is very stiff and does not stay taped to her cheek well. Rebekah surprised us (well, not really if you remember this) by pulling her tube out Thursday night. Thankfully it went in relatively easily and we were able to continue feeding her through the night. We are hoping that the doctor will replace it with a more flexible type of Ng tube that is designed to stay in for a few weeks at a time when we go for our follow-up appointment on Wednesday.

These two turkeys love their sister, too! Zachary and Aaron love to pose with Rebekah.

Speaking of Wednesday, we have another follow-up appointment with our cardiologist also. The two doctor's offices are conveniently located in the same building, so we will be able to go from one to the other easily. I know we will have an echo done on Wednesday, but I am not sure if there will be any other tests done.

Mommy loves the headwraps with bows! :)

We are hoping for a good weight gain when we have our check-up this week. I'm personally hoping for at least 8 ounces....we'll let you know!!

Have a blessed Lord's Day tomorrow!

Nancy

Good News, Bad News

The good news is.....I am posting! The bad news is....I was going to post pictures and couldn't get them uploaded. I will try again tomorrw. :)

Now for the real good news/bad news. The good news is that Rebekah gained six, yes, count them - six! - ounces last week. That was the largest weight gain in her life...literally! :) We were very excited that Rebekah gained so much. She probably won't find that very exciting in 20 years, but we're cheering for it now!

And now, for the rest of the story.....since Sunday Rebekah has been much more tired during her feedings. Actually, she has been tired to the point of drinking about half of her bottle and then sleeping for 15 or 20 minutes only to wake up hungry and finish the bottle. She has also been spitting up her medications about once a day, and that's not helping her tummy issues!

The solution? A feeding tube. Yes, I know, it's not the route we had hoped to take, but it seems that Rebekah is telling us that it's time. For now we have an Ng tube (nasogastric tube) which is inserted in her nose and ends in her stomach. The good news is that all of her medications and milk can be sent effortlessly to her stomach with no effort on Rebekah's part. The bad news is that it significantly increases Rebekah's reflux because the tube prevents the valve at the top of the stomach from closing completely.

So the plan is to feed Rebekah by bottle as much as she will take in twenty minutes. If it is at least 50cc's (almost 2 ounces) then we call it a good feed. If it is less than 50cc's, we will push the rest into her tube with a syringe. During the night Rebekah will be getting continuous feeds of 15cc's per hour to see if we can boost her growth and weight gain a little more.

Since the feeding tube was inserted this morning, Rebekah has had three episodes of spitting up significant amounts of her feedings along with some medication. They all occured during bottle feeding, not while she was on continuous feeds. We are waiting to see how she does through the night and will be talking with the doctor in the morning to reevaluate the plan.

We would appreciate your prayers for Rebekah's growth and comfort and also for wisdom for us and for Rebekah's doctors as we try to find a feeding plan that works for Rebekah.

Nancy

Another week of appointments

Just a quick update.

Rebekah has been doing ok with eating, as far as the volume that she is taking in. We are not sure if she is gaining any weight. We have a weight check on Wednesday morning. I will be surprised if it is anything big. She still is doing a lot of sleeping and seems to tire fast. I have had several feedings where she has fallen asleep in the middle and taken a 15 min nap then wanted to finish. We will see how she weighs in hopefully I will be surprised and she will have had good growth this week.

Also Rebekah has an appointment on Wednesday to she the GI doctor. We are waiting to see what their thoughts are on Rebekah and where they want to head from here.

We will continue to update you as we find out more.

D

Plan C, D, or maybe....Q!

What a difference a week makes! Last week we were excited about Rebekah's eating and saw a definite improvement in the amount she was taking at each feeding. Since this weekend, we have seen a significant difference as well.....just not in the right direction! Rebekah has been eating less at each feeding and has been very agitated during most of her feedings - a sign that appears to indicate that her reflux medications are not controlling her reflux adequately.

Yep! That's our sister! Justin and Aaron love to help take care of Rebekah.

Rebekah has also been more lethargic this week and has been sleeping more than she was last week. We decided to blame that on the less frequent doses of Lasix that Rebekah has been getting since last week's cardiologist visit. Rebekah's doctors today decided to go back to the original dose and frequency to see if that can get us back to where we were last week before we made the changes. Of course, it doesn't help at all when Rebekah spits up immediately following her medications!

Sleeping in spite of my brothers!

The official weight check numbers for this week were consistent....consistently low! In the previous week, Rebekah had only gained three ounces, and this week she decided to make a repeat performance. Rebekah gained three ounces this week to bring her up to seven pounds and three ounces. We didn't measure length today, but one or two of her little outfits are getting snug in the length, so she may be adding a little growth in that direction.

Silly monkeys!

In developmental news, Rebekah has started to smile just a little bit in response to Drew or I. It is fast and fleeting, so I haven't really been able to capture it on camera yet. I'm still trying, though! Rebekah is also getting better at holding her head up for a few seconds at a time. Because of her reflux, we haven't had much tummy time at all, but she does lift her head when Drew or I put her up to our shoulders.

Almost everyone! Caleb bailed out at the last minute. :)

We will have another weight check next Wednesday at our pediatrician's office. In the meantime, we are being referred to a gastroenterologist (GI doctor) to figure out what the next plan for feeding Rebekah will be. Some days it feels like we are swinging on a pendulum between good days and bad, plan A and plan Z, but it is comforting to know that God has a plan for Rebekah. He has had that plan since before she was born, before we even knew she existed. And we are so thankful for the doctors that He included in that plan to help us care for Rebekah. We have been blessed by a truly amazing team of doctors and medical personnel, and we are grateful for them!

Zachary bought this outfit for Rebekah. She looks so cute in it!

Please continue to keep Rebekah in your prayers in the next few weeks. The feeding tube is definitely on the table as an option again, and we are willing to pursue that option if it will be best for Rebekah. Please pray for wisdom for all of the doctors involved, for Drew and I as we care for Rebekah, and for Rebekah. Pray specifically for Rebekah that her tummy issues will be resolved and she will be able to grow as she needs to.

Thank you to everyone who continues to pray for our family and especially for Rebekah. We appreciate you all more than you know!

Nancy

P.S. Click on over to our family blog here for new pictures of the boys!

Wednesday check up

Pray for Rebekah; she has a weight check today, and she has had a couple of down days this week. She has been extra sleepy and having trouble eating. Hopefully Dr. DeMoss will have some helpful answers today. Will post when she gets home later.

D

Wall Street Journal

I just wanted to pass along an interesting article from the Wall Street Journal. The article highlights just how (relatively) new major heart reconstruction is in young children. You can click here to read it.

Nancy

Wednesday Weight Check

Hello all!

After being very excited about Rebekah's eating, we were a little disappointed to find out that she has only gained three ounces in the last week. Little Miss is now seven pounds even, but that weight gain put her at a little less than half an ounce a day. If you remember, her pediatrician would like to see a weight gain of an ounce each day or even a little more. We had really thought she was doing better in the last week.

Because everything else looks so good and Rebekah seems to be otherwise doing well, our pediatrician is going to give her another week and check her weight again next Wednesday. I will be able to continue breastfeeding between now and then, but we are going to try alternating between breastfeeding and botte feeding so that Rebekah does not have to work as hard at each feeding. We will also be fortifying the breastmilk she gets in bottles with a little more formula than we had been using before.

Please pray that in the next week Rebekah will gain close to half a pound and will continue to do well with her feeding. Also, I forgot to mention yesterday that we need to pray for her collaterals (the small arteries from her heart to her right lung) to continue to grow. That was the reason for postponing her surgery in the first place, so we really need those to be big enough to work with by the time she has her second surgery.

We are looking forward to a hopefully slower week next week. Zachary will be starting school on Wednesday and is looking forward to going back to school. Rebekah only has a weight check next week, so we should have a lighter doctor schedule. We are intending to enjoy the last few days before we start the school schedule again!!

Nancy

Here they are.....pictures!! We have had a hard time uploading pictures the last few days, and I was finally able to get them uploaded tonight.

Rebekah had a very good cardiologist appointment today. While she didn't much care for the chest x-rays, she slept right through the echocardiogram! :) Dr. Lucas is very pleased with Rebekah's heart and lung function right now. Rebekah is progressing just as her doctors and surgeon had hoped.

Zachary loves to hold Rebekah!

Our first attempt at a picture of all five - wow!

Caleb watches over Rebekah.

We love this little outfit...Rebekah looks good in blue! :)

Dr. Lucas made some small adjustments to one of Rebekah's medications, but otherwise we are good for two weeks. Tomorrow Rebekah will have a weight check at her pediatrician's office to make sure she is still growing and gaining weight.

Rebekah has surprised us all and is really doing well with nursing. She has been nursing about half of her feedings in a day now. I am so thankful that she is doing this well. Hopefully she will work up to fully breastfeeding by the time school gets started next week. As long as Rebekah continues to maintain her weight gain, Dr. Lucas is okay with letting her breastfeed and not fortifying her milk.

One of us will try to update tomorrow after Rebekah's weight check. She was 6 pounds and 13 ounces last week. I'm hoping to see her close to seven and a half pounds tomorrow! :)

Nancy

Crazy week.....

Whew, where to start! Therapy for Rebekah, the boys had dental work, a cardiologist appointment, weight check, mommy has a doctor appointment, Caleb has therapy, getting ready for school next week, and Uncle David coming for a visit for a few days. Just a little busy around here this week! We will update you later on how the cardiologist appointment goes today and hopefully some new pictures too.

Overall Rebekah had a good week last week. We will see where she weighs in, but I think she has put weight on again. This is good. She has periods of being more awake and likes to hang out with Daddy.

Got to get back to the races before I get left behind.

Talk to you all soon,

D

Daddy's thoughts today

Just some thoughts today. While the big excitement is over for now and we seem to be settling in at home, thankfully altogether again, it has been dawning on me that we have just begun this great adventure. One phone call already to the cardiologist about Bekah's incision to make sure all is ok. Now watching her every move to make sure things are normal and debating when things are not normal. Wondering what warrants a call to the cardiologist and what doesn't. This is very different for us, and we are learning along the way that is for sure.

We so appreciate the prayers and support for our family. I thought I would mention a few more prayer requests that are on my mind as we settle into our new lives with this Little Lady. We certainly hope you will come along with us on this adventure and continue to pray and give your support to our family as we walk this road with Rebekah Grace.

1)Pray that Rebekah will continue to grow at the rate the doctors are targeting (about an ounce each day).

2)Pray that we can control her reflux so that it won't be a stumbling block to her growth

3)Pray that her heart will continue to be strong as it works double time right now.

4)Pray for preparations for her next surgery (funds to stay at MUSC, doctors, child care for the boys at home)

5)Pray that we can get both of the older boys in the same school to make the schedule easier.

6)Pray that the Lord will provide employment for me soon. I am still unemployed and the needs here are many.

7)Pray for strength for Nancy as she will be taking on more of the house and Rebekah's care when I return to work. (We are both short on sleep....)

8)Pray for the boys as Mom and Dad's time is stretched at the moment with taking care of Rebekah.

9)Again, as we have prayed from the beginning, pray that the Lord would be seen through our family, that we may be able to help someone else. I think most of all we want to be used by the Lord for His glory.

While we are so thankful for the prayers and support, and our wonderful doctors and nurses, we must give all praise to the Lord for He has brought us this far. No amount of skill or knowledge replaces the gracious hand of our Lord and Savior.

I guess that sums up what was on my mind today.

D

Check Up

This will be brief since we are experiencing some internet troubles. Rebekah's apointment went well today. She gained 5 ounces in the last five days!! Her pediatrician would have liked to see a little more weight gain just so she can make up for lost time, but in his words, we'll take what we can get. We are very thankful for the progress Rebekah has made with her eating. Continue to pray that her eating goes well and that we get some of her reflux issues more under control as that seems to be a big hinderance to her eating right now.

More detailed updates and pictures hopefully coming tomorrow!

Nancy

Quick Update

I know, I know....I won't win blogging mommy of the year award!! I'm sorry we haven't gotten a post up in the last few days. Things around here have been a little busier now that Rebekah is here! :)

At the end of last week, Rebekah's eating was definitely questionable. She would have couple of good feedings, then have one or two where she didn't eat much more than half of her goal. Between Rebekah's last two check-ups, her weight gain had only been 3 ounces (after six days). The doctors would like to see Rebekah gaining an ounce a day or very close to it. We are going tomorrow for another weight check and are hoping that things will look better. Rebekah has definitely been eating better (although spitting up more) since Saturday, and it seems to us that she has gained a little weight.

We will update with news tomorrow after Rebekah's appointment!

Nancy